Where God leads you

We are coming up on the 4 year anniversary of the beginning of our CDH journey. The other day I met a woman who was pregnant with her second child who would be going in for her ultrasound in a few days. I told her I would be praying for her appointment. I didn’t tell her why I  have a new appreciation for the 20 week ultrasound and just how many things I know they are looking at. How a healthy pregnancy is SUCH a miracle in and of itself. How every says they just want a healthy baby – and the complete and utter shock it is when your baby isn’t. I remember my thoughts the day of my 20 week ultrasound and how I was so incredibly excited to learn the gender of our baby. That was my focus. I assumed everything would be fine. I was not worried about birth defects. We had opted against the earlier amnio because we knew it wouldn’t change the course of our decision if we were told the baby had Downs or another birth defect. Looking back at the journey – the highs and the lows – I see God. In so many ways and places.

I am a different person today with a different faith. You see, the person who started this blog was quiet about their faith. I definitely did not lead with it, and I was afraid. I remember the first posts I made where I quoted scripture and boldly asked for prayer – how that was such a step outside my comfort zone. I was afraid of alienating my non-christian friends. And then… as my world was being broken down all around me with the knowledge of this baby that was growing inside me, might not live outside of my body. I stopped caring what others might think. I knew I needed God in a way I had never quite needed him before. Not just to heal and protect my baby – but just to endure each day. I felt like such a mess – yet people always commented on my strength.  I was quick to remind them whatever they saw, whatever strength perceived. That did not come from inside me. That is entirely God. I am still awestruck and at a loss for words that God would do all that he has for me.  Why? When we were given this diagnosis I never gave much thought to why me. Why not me? So many sad, tragic things happen to much better people in this life. Why not me? But more often, since it all happened and I have seen so many babies not make it – I do ask myself – why did Finley make it? Why are we so blessed? I wonder what the plan for her life is and what God intends for her to do still. And I come to the verse, we are blessed to be a blessing. “I will save you that you may become a blessing” (Zech 8:13)  That is what I want with my whole heart. To be able to support and love and offer hope by sharing Finley’s story. By walking with other families the way others walked and supported us.  I don’t think God did this to us.. but I think this is a way that God uses all things for good.

4 years later…

I have a healthy, happy 3 year old. She is such an amazing little human. To see my two daughters play together (and fight) – it is thousand+ answered prayers. Finley had a lung function test back in December and actually did the test correctly (2x! Yes, I am totally bragging on her!) and she had above average lung function for a 3 year old. How could that even be possible? Well, the comparative data pool isn’t huge since many 3 year olds can’t even do this test accurately. The office said they don’t usually do this until they are at least 4 or 5 – but after spending some time with our precocious Finley, they decided she was not average.  How many people prayed for lung tissue for my girl? Just hearing those results was to me a total confirmation of answered prayers.

My faith was lit on fire. I am no longer lukewarm.

I have a CDH family that I am so thankful for. Such amazing people I have met along the way. We are bound together and understand each other in such a powerful way.

Our friends and family and even perfect strangers that prayed and supported us in countless ways. I love you all so much. I will never forget any of it, and it is because of all of you that it inspired me to be the blessing that you all were to us.

How God planted a seed about a race while Finley was in the NICU and how that has grown to a Foundation, a Portland race (now in it’s 3rd year), and next year – a Seattle race. None of these are things are things that feel comfortable to me. But somehow, God has always brought me the people  to make it happen.  I am excited and terrified to see where he leads me next.

Sorry for such a rambling post – just a lot of thoughts that have been going through my head…

Advertisements

A second birthday and the birth of a race….

Sunday was a big day. Finley turned 2 years old. As I woke up at 4:45 AM to get ready for Ladybug Run for CDH Awareness I had a little time to reflect on what this day meant. It was such a powerful day on so many levels.  As I held Finley in my arms before I left for the morning, I once again went back to two years ago when I also got up very early to go to the hospital to be induced. I would be meeting Finley for the first time, not knowing if we would have minutes together, days, weeks, or years. The tears began running down my face because I am filled with such joy that I have been able to have 2 years with this amazing little girl. She is determined, feisty, so funny, so beautiful and I just know the Lord has special things in mind for her. He chose ME to be her mother. That is a honor I won’t take lightly.

The race was a HUGE success. I will write more about the race on my other blog http://www.onethousandtwelvemiles.blogspot.com soon. But some things I want to mention now. God was SO present. I got chills over and over when I think about how God made this happen. I know God planted this seed in my heart, and to have followed him and listened and only blessed me so. I didn’t know anything about creating a race. But that didn’t matter. God broke down EVERY barrier. Brought me people with wisdom and expertise, friends with contacts and heart to serve, donations, sponsors – everything fell into place. 237 adult registrants and 50+ kids. For a first year race – these are AMAZING numbers.

My dear friend Cody prayed before the race. She is such a powerful speaker – I was so blessed she agreed to do this for us. I was nervous how this would be recieved by everyone, as it is not standard practice to open a race in prayer – but it was important to me. She read from Romans 8 “37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” I almost lost it completely it was so fitting for this day, for everything we have been through.  I got several comments from other CDH parents about how the day was healing for them, and lots of thank yous.  I am just so humbled and thankful to be able to serve. To use my gifts. I can’t wait to see where this all takes us.

To see all the people wearing Ladybug shirts, costumes, to see the day unfold after months (years actually) of planning – it was just incredible. Running with Finley in the Diaper Dash (though she didn’t actually want to go towards the finish line) was so sweet. It was a perfect day – even though MANY things didn’t go as planned. Somehow I was ok with it, because this day actually happened. This day that was just a seed planted not quite 2 years ago.. grew and grew and took on a life of it’s own… and God willing, it’s only going to get bigger.

Thank you again to everyone that has supported us over the past 2+ years.  Our prayer warriors have sustained us – you have prayed for miracles and we received them.

We love you all more than words can express.

Disjointed thoughts…

I started this blog post the other day, and then went down a couple different paths…

Emerson Eggerichs, the author of Love and Respect came and spoke our church last Sunday.  He is a phenomenal speaker, so if you ever have the opportunity to hear him speak – jump on it.  There was so much in his sermon that spoke to my heart – but one concept he brought up that really made me think about our CDH journey is this idea of the ‘wounded healer.” The jist of it is that instead of allowing yourself to be victimized by the things of your past, you use them to help others. I see wounded healers every day in our CDH family. The parents of Angels who are reaching out past their loss to do amazing things in honor of their child, and reaching out to support other mamas as they walk down their CDH path. The parents of Survivors who have their own wounds and pain who also honor their child, help and support others along the way, all the while dealing with the long term aftermath of CDH. All around us their are wounded healers. People who reach out and share their stories of pain and heartbreak to help another in their darkness.  One way that we all use what happened to us for good.  We will never understand the ‘why’ of all of this this side of eternity – but instead of focusing on that we can let go and move forward.  How when we are ‘wounded’ by certain experiences in our life, it allows us to recognize and relate to these ‘wounds’ in others. I agree that it is an honor to be able to pour into another person and support them on their journey.

Finley is 22 months old today. 2 months until her second birthday – and what a birthday it will be!! We will be honoring her with the 1st annual Ladybug Run. Nothing says ‘Happy Birthday” like 200+ people running, walking, and volunteering to raise $$ to help others. I am so excited for this event and am just blown away by how things have just been coming together. I felt like God put this on my heart, but I didn’t know the first thing about putting a race together. But I continue to trust him and felt like if this was the course he meant for us, it would come together and it has. Now we are in the big push to get people registered, and are already at 80 registrations! My goal is 200, which is really good for a first year race.  I am also really excited about meeting some of the other CDH families in the area that I haven’t met yet..  We are planning on a live Ladybug release to honor/remember the Angels and my dear friend Cody is going to  say a prayer.

Finley continues to be such an absolute joy. She says, “love you” and loves giving hugs and kisses. There is such a bright light inside of her. She rocks and bounces her babies and her favorite toys seems to rotate between bear, doggy, and kitty. She loves to pretend she is a kitty or a chicken. Have I mentioned just how funny she is? She continues to be a daredevil and I know this girl is going to live her life without fear – which warms and terrifies my heart.  I am so thankful she hasn’t reherniated again – my hope for her is that she doesn’t have to see the inside of an operating room during her childhood again. I know it is a very real possibility, but I will just trust.  How can I not – look at how far we have come… I get to see evidence of a miracle every day. I can’t forget – or take either of my girls for granted. None of us know what tomorrow will bring. All we have is today. I read another blog yesterday where the mom listed the things she hopes she never forgets which I just loved… here are a few of mine;

baby milk breath

the first time I held them both

the way Rowan watches out and loves her sister

Rowan’s face when she first wakes up and comes out to find me and her sister

how Finley closes her eyes and comes up close and kisses and makes a big MU-WAH sound

the first time I saw Finley without being hooked up to a single machine

sisters holding hands

the sound of their laughs and how it is different at each age

eyes looking to you while nursing and the baby hand on the breast

watching them sleep – at any age.

the feel of them cuddled in my arms.

their smell.. especially baby smells.

the feeling in my heart right now……

an update in photos

I am horrible about uploading my camera sometimes… I found photos from December on this upload.

Finley is doing great… She is getting more verbal every day. She says; Hello, Bye, night-night, no-no (so cute right now, but I know it becomes less cute as they get older), YES!!! (usually with great enthusiasm), Ro-Ro, Octopus (what she says sounds very close, but also very funny), I do, apple (for some reason one of her favorites), num-nums (when she wants milk) and a few other things.

She also is obsessed with dancing and spinning. I will need to get it on video and upload. Let’s see how long that takes me.

And a shameless plug for the Ladybug Run…http://www.reasontorun.com/races/ladybugreg.html Have you registered?

Almost 18 months

Finley had a check up last week with her Pediatric Surgeon, Dr K last week since she actually hadn’t been seen in clinic since August.  I was happy to find out that they probably won’t be doing the as frequent ultrasounds on her bile duct region and most likely just wait until next October to do another MRI/MRCP to check in to see if her common bile duct has decided to finally truly look at a Choledochal cyst or (what I am praying for) look normal.  Her last X-Ray looked normal, and I am not sure when she is due for another chest X-Ray but as she is nearing 2 – I think they will eventually just be checking for reherniation on an annual basis.  As much as I love everyone at Emanuel, I am happy to see less of them.

Finley is talking/babbling up a storm and is saying more words every day. I just love this stage. Now that she is walking, she and big sister Rowan are getting into more altercations over toys and I am trying to figure out some fair rules… a friend mentioned the rule that toys in common living areas are for sharing, but toys in bedrooms can be deemed “off-limits.” So we are trying that now.  For all the fighting over toys, Rowan does show so much love to her sister and it just makes my heart swell. She is always telling “Finney” how much she loves her, and wants to hold/hug/squeeze/smoosh/lift her. Four year olds have no idea of their strength so I have to rush in and save Finley frequently.

The other big news is that the website went live last night for registration for Ladybug Run! I am so excited that this is becoming a reality. We have established the Ladybug CDH Foundation which will funnel the funds to research; Dr K is about to start a very cool research study which I won’t go into detail about here since I don’t know if it’s ok to talk about yet; and to help CDH families in Oregon.  I hope you all will support us by either walking or running (5K and a 10k) or volunteering. It will take a massive effort to make this happen and I will need every one of you!! Also, for non-local friends wanting to support – I am hoping to have my tax-deductible 501c3 status finalized soon, so donations will be tax deductible.

For now – please help us get the word out about the race by Facebooking, Tweeting, and recruiting friends to register! If you know of any businesses that would like to sponsor, we definitely need sponsors. Right now my biggest needs are getting more sponsors, the T-shirts – both getting product and the screen printing, and finding a printer that I can print some flyers/postcards to leave at businesses for either a cheap rate, or in trade for sponsorship (preferable).  I am so lucky that I have a group of amazing women that have volunteered to be my race committee and are helping plan this event because I could never do this without them.

Ladybug Run….am I crazy?

I am sitting here wondering what I got myself into. I am scared that I have bit off more than I can chew. I am nervous. I am doubting myself big time. Wondering if I should just bag it.

There is a lot that goes into planning a race.

A lot.

It was seeming manageable and I am pretty organized. I have a Race Committee (love you ladies). I have a race organizer- who i also love. I have secured my race insurance and almost done with securing the location (Champoeg Park). Now I just came to the decision today that I have to create a non-profit to make this all work. Sponsors probably would be a little leery of writing large checks out payable to little old me. But creating a non-profit? Wow. That’s big. That is what has put me over the edge and is freaking me out a little. I have all these big ideas and things that I would love to do – but the fear of failing is there. If I don’t go all out – it doesn’t seem like this big huge commitment. But, if I have non-profit I could help local CDH families more directly since I just did find out that it wouldn’t be feasible to ear-mark money like that via the local hospitals.  I have felt from the very beginning that this is something I am supposed to do… so many things have come together that can only be God.

But…still…..

Me? Organizing a race was one thing… Creating a non-profit seems so much bigger.

I am hoping that this fear and freaking out it because I am going outside my comfort zone and maybe poised to do something really good. We always feel under attack at those times. So I will push forward. But faithful readers and local friends- I will need your help to make all these big dreams a reality. I will need lots of volunteers come race day (8/12/12)  and lots of help getting the word out to attract a huge turnout. Not to mention prayer!

And sponsors. Lots of sponsors.

Prayers for clarity and peace right now. Lord, if this is your will – let that be clear to me and give me the strength and knowledge (or bring the right people to me) to make this all a reality.

Inspiration

This is the story about how Finley inspired me to run.

I have wanted to be a runner.. In my twenties I took up running, but was felled by injury and gave it up. I tried again a couple of years later to same result. I had accepted the idea that maybe my body wasn’t meant to be a runner.

While Finley was in the hospital I had a dream about running. It felt so real. I felt the pull again. All around me a bunch of friends started to get more serious about running. I wondered..could I try again? Then I started to fantasize about holding a race in Finley and all the other CDH babies’ honor – to raise money and awareness.  Her fight would inspire me to run for her. These lungs in my body that I have taken for granted – something I would never take for granted in her body – would be used. Each breath is such a gift. For all of us. The doctors would always say that her long term prognosis with CDH was excellent with the disclaimer, “but she’ll probably never be an Olympic runner or swimmer.” Maybe she’ll prove them wrong again. Maybe we’ll run a marathon together one day.

I started to run again last Fall. I started with a Couch to 5K program. I was all set to run my first 5K on New Years Day and Finley had other plans with her reherniation and hospitalization. So I ran 3 miles on January 2, 2011 in the neighborhood around the hospital. I ran my first 8K for St Patricks Day, a 10K a few weeks later with Jon pushing both girls in the Double BOB, and yesterday, a little over a year after Finley came home from the NICU, I ran a Half Marathon. Through it all – when it got hard, when it hurt – I would always think about Finley. How she never gave up, and neither would I.

Yesterday was not my best run ever. I had injured myself 10 days before the event, and I wasn’t even sure I was going to be able to finish. I prayed to God that I would be able to finish. Ironically, the injury I was worried about isn’t what bothered me during the run. Around mile 5, my IT Band, which HADN’T been bothering me during the last few weeks of training, flared up. But I kept going. Philippians 4:13 was my mantra (“I can do ALL things through him who gives me strength”).  Someone actually ran past me with that verse on the back of their shirt and it got me running again. I also loved the quote on some of the shirts, “The courage to start…the faith to finish.” I ended up walking more than I wanted to – but I have logged some long runs before this day and I know I can run 12+ miles. It was not in the cards for me this day – but I did cross the finish line. I have learned many lessons through my daughters.  I am thankful for what each day brings – even if it doesn’t go exactly as planned. I am thankful for this body that I have been given that allowed me to accomplish this goal. Sure, I could be upset that it didn’t go the way I hoped for (more running), but that’s life. Things don’t always go as planned.  I crossed the finish line – I accomplished my goal. One year ago running a 5k was my goal- I am thankful for how far I have come. I am reading this book that talks about living Eucharisto (to give thanks). Giving thanks in all situations (1 Thessalonians 5:18) Yesterday was a big day. I ran my first half marathon with some amazing girlfriends – many of them supported and prayed for our family over the last two years.  At the finish line waited my wonderful husband and my daughters. I am thankful for all of them.

After the run with 2 of my wonderful friends and my inspiration

Finley’s race is going to be held on her second birthday and it’s going to be called The Ladybug Run (after the section of the NICU she was in). We will be raising money for local research at OHSU and/or to help CDH families in the NICU. I will be looking for sponsors, runners/walkers,  and volunteers – so please let me know if you want to help out in any way!!

One more week until Finley’s MRCP.  Praying with thanksgiving.